As ALS makes him wind down, Bruce Kramer reaches out

Kramer's son David checks him after a shave.
David EK Hollins checks over his handiwork and gently massages his father's face after a shave.
Jennifer Simonson / MPR News

Editor's note: This is part of our continuing series of stories about Bruce Kramer, the former dean of the College of Education, Leadership and Counseling at the University of St. Thomas, as he copes with life after being diagnosed with ALS, also known as Lou Gehrig's Disease. You can read all the stories in the series by clicking here.

For students or political office-seekers, fall can be a season of fresh beginnings. For others it's a season of winding down — a time for endings.

Bruce Kramer, 58, is winding down. It is nearly four years since he was diagnosed with amyotrophic lateral sclerosis, or ALS. And while his condition and impending death make him "sad beyond belief," he says, he has a new appreciation for life.

"And it's something that I would like to share," he said recently. "It's not something that is meant for me to hoard, but rather to give back."

"We have this myth, particularly in Western culture, that death is something to be avoided at all costs," explained the Twin Cities resident. "And yet what I have learned in this past four years is that death focuses you. It brings what's important right to the front, and it cuts through the things that just really don't need to take priority anymore."

Bruce Kramer
Bruce Kramer, who has ALS, speaks with Morning Edition host Cathy Wurzer, Sept. 4, 2014 at Kramer's home in Hopkins.
Jennifer Simonson / MPR News

"Wouldn't it be nice if we could live our lives that way, where we have the honesty with each other to actually express our love?" he asked. "To learn to accept the fact that we are all going to die, and to be grateful for the time together?"

Two systems assist Kramer's breathing, though he has to make an effort to keep them coordinated. A lightweight harness goes around his head to keep a breathing mask firmly tucked in place. It makes him sound as if he has a bad cold. The mask is connected to a BiPAP machine, which he has to synchronize with the diaphragmatic pacing system that he had installed at Mayo Clinic last year.

"Gosh," he said. "It makes me sound like a used car."

Bruce Kramer and his son David
David EK Hollins, left, straightens his father Bruce Kramer's fingers at Kramer's home in Hopkins.
Jennifer Simonson / MPR News

Although talking takes conscious effort, and his life has been busy lately — writing a book for the University of Minnesota Press, for example — Kramer has been taking time to make sure people know how he feels about them.

"I do believe that I'm closer to the end than I probably would like to be," he said. "I've been using the time to say the things that I really feel need to be said...to express gratitude...to tell people that I love them, people that you wouldn't normally say that to, but the fact is that you develop these relationships and then we forget to tell each other how we feel.

"I'm looking for the alignment of love and gratitude and acceptance and trying to help people, as they come in to see me, to have a little space for that in their lives. If they could find that same space for acceptance and gratitude, maybe it doesn't take facing something like ALS to bring that along. And maybe that's opportunity for tremendous growth as a human."

What about the effect on his family? "Well, I'm happy to report that they're not real happy about it," he said with a laugh. "But I mean that in the best of ways."

Shaving
David EK Hollins, left, shaves his father Bruce Kramer at Kramer's home in Hopkins.
Jennifer Simonson / MPR News

Three times a week, his son David visits to give him a shave. "It's such an intimate thing to do, to shave another person," Kramer said, "to turn that over to somebody with a single-edge safety razor. Of course, I have to really trust. But it's so gentle...And I know that we would not be this intimate with each other if it weren't for the fact that I am facing my death soon." His son Jon, he said, is always on the lookout for music his dad might like.

His daughters-in-law "are just the most beautiful people — so caring. And they tell me they love me every time they come to see me," he said. "And then of course I have this granddaughter. And she doesn't know what's going on. I think she wonders, 'Wha's wrong with that guy? He's the only one that doesn't pick me up and hug me.'"

"So, really, the family is doing very well," he said. "I haven't spoken about Ev [Emerson, his wife]. But Ev is just — she's remarkable. We probably cry together once a day. And I'm glad for that, because it's a release.

"And it doesn't mean that we're not sad...But in the end, when this is all said and done, you will be able to look at this family and say, 'There was love. There was great love.' And that love will continue. So I think we're doing OK."

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